Tuberous sclerosis complex: Concerns and needs of patients and parents from the transitional period to adulthood

Article ID	Journal	Published Year	Pages	File Type
8683585	Epilepsy & Behavior	2018	9 Pages	PDF

Abstract

The current study provides patient-driven information, allowing recommendations to facilitate the (transition of) care for young adults with TSC. In addition to seizures, tumor growth, and TSC-associated neuropsychiatric disorders (TAND), more attention is needed for concerns and care needs specific to the transitional period, participation, and environmental factors. Adult healthcare providers should offer expert multidisciplinary care for adult patients with TSC, including attention for parental stress.

Keywords

MEC mTOR ICF SEGA TAND Subependymal giant cell astrocytoma Attention-Deficit/Hyperactivity Disorder Autism spectrum disorder ADHD International Classification of Functioning, Disability, and Health LAM Lymphangioleiomyomatosis intellectual disability ASD mammalian target of rapamycin

Related Topics

Life Sciences Neuroscience Behavioral Neuroscience

Preview

Tuberous sclerosis complex: Concerns and needs of patients and parents from the transitional period to adulthood

Authors

Pauline Both, Lyenne ten Holt, Sabine Mous, Joke Patist, André Rietman, Gwen Dieleman, Leontine ten Hoopen, Menno Vergeer, Marie-Claire de Wit, Karen Bindels-de Heus, Henriëtte Moll, Agnies van Eeghen,